Reminders

For all of our friends and supporters in the greater Sacramento area, please remember that William's fundraiser at Chicago Fire Restaurant is today!

Remember, if you would like to attend, please print out the flyer (click on the picture for a larger view) and present it to your waiter/waitress. 15% of your order will be donated to William.

William and I are currently at Sutter Hospital where he is receiving some much needed transfusions.  The blood report from this morning was the lowest I have ever seen it and it is really how quickly his numbers drop! Remember he received a transfusion on Friday,3 days ago, and today he his little body was basically empty! 

This is a copy of William's CBC (Complete Blood Count) today. The first column is a description of each item measured. (FYI ,WBC = White blood Cells
RBC = Red blood Cells) The second column is William's counts from today and the third column is the normal range ...


















Keep on Keepin' on.

The good, the bad, the kind, the love, and the unknown.

Day 10 of Chemotherapy round 12.

Yesterday William was scheduled to receive platelets; however, when we arrived on the 5th floor
(pediatric outpatient) we discovered that all of the rooms were full and the waiting room was filled with 6 additional families waiting for beds to open up. We decided to not wait around and chance William being exposed to hospital germs, instead we decided that it would be best to return in the morning.  So, here we are on the 5th floor waiting for William's platelets to arrive.  The transfusion of platelets is normally a 30minute to 1 hour process but, we usually wait an additional 2-3 hours for the the paperwork to get completed, platelets to arrive, benadryl to get administered etc. etc. It is normally during this waiting period that William and I do homework and catch up on his cub scout activities.

This morning's activities in the room is different, William is sleeping off a strong dosage of Dilaudid and I am desperately trying to catch up on some much needed insurance paperwork. UGH! When we arrived at the hospital this morning William had a slight low grade fever (99.0) If his temperature rises above 100.5 

 a 0.6 degree difference, it would be an indication that his little neutropenic body is trying to fight off an infection, and that means that we would get admitted for observation and antibiotics. We recognize that a low grade fever admittance is a safety precaution, but we really don't want to stay here for the weekend.

Next week William is scheduled to start phase two of the new chemo regimen. Phase two is the outpatient combination that we get to do at home and on the 5th floor. Fortunately this combination allows us to spend nights at home with Randell. Unfortunately, we are not sure how William's his body will react to receiving the two two different combinations(Carboplatin and VP 16, and Irinotecan and Temador), so close to one another. Last month William had no side effects with the Irinotecan and Temador, but then again his body also had 30 days of rest and recovery in between the previous Carboplatin and VP 16 chemo treatment, this time there is only a 12 day break. I can't help but to get anxious and scared. I like to be prepared for all of William's medical needs, unfortunately it is hard to be prepared for the unknown.

My mom will be coming to California in March- WOO HOOO - During her stay here Randell and I will be able to take a much needed break. Together we have done an amazing job in coping with reality but, we are both tired and in desperate need of RandR. On March 25th GiftToCure will be hosting a Masquerade Gala at the Arden Hills Spa and Resort. The event will be strictly black tie (and mask) and will focus on the awareness of DSRCT and much needed research funding.  A silent auction, live music, and local celebrities are a few of the evenings attractions ;) Arranging an event of this magnitude is exhausting. Stacie Hubbard, one of the wonderful volunteer's with GiftToCure has taken on this project and sacrificed a lot of her time and energy...Thank you Stacie for being so kind and gracious -  You are truly and angel!

Emails and blog posts about the event and ticket sales will be sent out in the near future.  In the meantime, please keep an eye out for an email from GiftToCure regarding silent auction items.

William and I want to send out a special thank you to all of our friends at Chevron in Houston - This group of strangers has in the last few months become a big part of our lives. Their unconditional love, support, prayers, positive words of encouragement and kindness has made a big difference in our lives. They say everything is bigger in Texas, well this is true because this group of strangers have the biggest hearts. To all of our faithful  prayer warriors, supporters and friends in Houston, Thank you! Thank your for William's gracious gifts,kind cards, and Thank you for the love!

We appreciate every one's continued prayers and love! It is the kind words that get us through the toughest times!

Keep on keepin on! Live Strong in God's unconditional love and the miracle of healing!

Gloomy winter days

William is on day 8 of his protocol and I am sorry to say that the side effects are creeping in on us.

William is on a 24/7 feeding regimen of Zofran and Reglan (+benedryl) both of these drugs are used to prevent and/or stop nausea, unfortunately their side effects are headaches UGH!  Dilaudid, William's pain medicine,  is usually the drug of choice for his headaches and other pain; however, Dilaudid causes nausea so we are staying clear of that. Tylenol would be great for stopping the headache but unfortunately it could also mask any fevers. So, the next best option is Motrin but, Motrin does have the side effect of causing serious bleeding in chemo kids.... So, the big question for the day is WHAT DO I GIVE WILLIAM THAT WILL MAKE ALL THE PAIN GO AWAY AND HAVE MINIMUM SIDE EFFECT?  I have called the doctor and I am waiting on him to call me back with some hopeful answers, in the meantime all I can do is rub his head and give him hugs.

This morning I noticed that William's knees and ankles all have small bruises from them rubbing together while he sleeps. So, when you add it all up:

bruising+tears+tired+nausea+headache+constipation = BAD CHEMO SIDE EFFECT

Tomorrow afternoon William and I will be returning to the hospital for transfusions, hopefully he feels better after that. It is the worst feeling in the world when you, a mom, can  do nothing to make the pain and chemo monsters go away. 

That's all for today.

Keep on Keepin on. Live Strong in God's promise of miracles and healing.

Happy Valentine's Day

To all of our friends, supporters, aunts, uncles, grandpas, grandmas, cousins, sisters and extended family members...................

Chicago Fire Restuarant - February 21st.

If you are attending the Fundraiser - Please click on the below image, a new screen will open up and you will be able to print the flyer from that screen.

The best day ever!

Today one of our hospital buddies, Kaleb Phillips, had a fundraiser at Airsoft Battlegrounds. Some of the activities and attractions at the event included face painting, jumping castles, airsoft battles,  various karate demonstrations, photo booths and food vendors.

From all of the conversations leading up to today I knew that William was excited; however, I did not expect the amount of energy that came exploding out of his little body! From the time we arrived at 11am until the time we left at 3pm, William was constantly running around, participating in all the events and having an absolute blast.

William officially finished chemo on Thursday night and knowing that his platelets have not yet been affected, Randell and I decided that it would be okay for him to participate in the Airsoft games. For those of you that do not know, Airsoft is a team sport similar to paintball where replica firearms shoot plastic BB rounds. The location we were at today was an indoor arena specially designed for the game. William did two rounds and had an amazing time.  Yes, it does hurt. Yes, William was shot. Yes, William has bruises. Yes, William had a lot of fun!

Somehow even after almost a full hour of running around playing airsoft games, William still had enough energy to bounce around on a jumping castle, participate in jousting games and get his face painted.

Here are some of the photos from today............

 

William and Kaleb!

Kaleb is 7 and he is fighting his second battle with Rhabdomyosarcoma.

While we were driving home this afternoon William exclaimed that he had the best day ever!  The comment and the memories we have from today is the reason why we keep fighting. The laughter, giggles, smirks and smiles is the emotional fuel that we all needed to refill our emotional gas tanks!

It is sometimes necessary for me to function with my emotional fuel gage on empty so I am grateful for today's refueling because not only did it fill me up, it provided me with some reserves ;) I read something the other day that stuck with me "You don't know how strong you can be, until being strong is your only option"  The strength I have is not always shown or expressed in ways that are appreciated by everyone and this leads me to something that I need to say ----------

Even though this blog was intended to communicate William's medical treatment and updates, it has become so much more. The blog has been a journal of my thoughts, fears hopes and dreams. It has been a memoir of events, both happy and sad. It has been a medical journal for treatment options, and it has been a dictionary of explanations and terminology. What this blog was never intended for was the use of a weapon or a tool to be used against me or my boys.

Lately, I feel like there may people out there that criticize and judge me. Some criticism has to do with William's medical treatments, some of it has to do with my relationship with Randell, and some of the criticism even surrounds my intentions with this blog. Sometimes the criticism is valid and I will do my best to correct the error. Yes, there are a whole lot of raw emotions and feelings floating around and it is sometimes easy to loose sight of love, compassion and forgiveness. What I am trying to say is that during the last 10 months I have been consumed with William's diagnoses and somehow, without my intention to do so, I have neglected important relationships.  I don't want to make excuses for the lack of contact, the missing connection or the missed opportunities, what I want is my apology to be heard and for all the anger to just go away!  I am exhausted and I struggle for the energy to defend my family, my relationships and my decisions. My apology is sincere and I hope everyone accepts it.

Keep on Keepin on. Live Strong in God's love!

Laughter is the best medicine!

Day 3 Chemotherapy Round 12
William will be finishing up on his third dose of VP16 tonight and if everything goes smoothly, we'll be headed home around 11pm. YIPEE!!

For the past three nights we have been sharing a room with Kenji, an extremely sweet 8 year old little boy who is also fighting cancer. We've roomed with Kenji once before so fortunately the two boys are familiar with each other and they get along fantastically! It is great to see the two boys sharing jokes, playing Wii, and comparing spelling skills (the hospital teacher gave them a verbal spelling test) During the past couple of nights there has been a of laughter and giggles between the two boys. Having a buddy to share the room with makes all the difference in William's treatment! Thank you Kenji for being a good buddy!

Speaking about hospital buddies, William M. one of my William's hospital buddies, is currently at UCSF where he is going through the long and dangerous process of getting his bone marrow transplant. - We would appreciate it if you would please keep William Murdock and his entire family in your prayers. 

I almost forgot to tell you about William's stardom! In an effort to raise awareness about DSRCT, William was featured on the KOVR3 6pm news on Tuesday night. William has been on the news a couple of times during the past year but, this is the first time that the report was focused solely on him. Due to the attention and feedback received from everyone regarding the interview, William's self-esteem has raised so much that I now call him Justin Bieber Jr :-)  For the past 11 months there has been a lot of stares and comments from peers and strangers that left William embarrassed about his little bald head and diagnoses (BTW, people need to teach their kids to not stare). Walt Gray did such a great job with William's news story that William is now walking around with a big goofy smile and gleaming pride! There is no more shame about his lack of hair!  Nothing beats the amazing feeling of your child's happiness and it is the bright, cheery, happy and memorable moments like these that give us our strength and courage to continue the fight.

Please remember that there are two fundraising events this month for William.

Fork in the Road to Apocalypse is a book written by Jeff Gonsalves, one of William's fabulous nurses and a talented author. All the profits from February sales will be donated to directly to William.  The book can be purchased on Amazon.com

On 2/21/11 All 3 of the Chicago Fire Restaurants will be donating 15% of their sales to William. If you would like to participate in this event, you will need to download and print the flyer. The flyer must be presented to your waiter when placing your orders. 

I want to thank everyone for the continued prayers and kind emails! William loves reading your messages, emails and cards!

Keep on Keepin on. Live Strong in God healing all of the cancer in Sir. William's body!

Here we go again!

Day 1 Chemotherapy Round 12
William started round 12 of chemotherapy last night and fortunately everything seems to be going really well. The chemotherapy he is receiving has in the past given us problems with neusea, constipation, headaches and fevers, hopefully we can avoid them this time.

I am exhausted and don't feel like writing, I will try to write more tomorrow....

LOOK AT THE WILLIAM'S BEAUTIFUL HAIR!!!

Keep on Keepin on, Live Strong in God's promise of miracles and healing!

The good, the bad, the ugly and some hope.....

It has been brought to my attention that with all the excitement about our LA trip, I completely forgot to update everyone on William's pinewood derby last week.  DRUM ROLLLLLL......William won his first four elimination races; unfortunately he lost his 5th race by .003 seconds..... Such a bummer. Out of all the participants (40+ total), William placed 15th. We all thoroughly enjoyed the day and William was proud of his accomplishements!

Our trip to LA was a memorable and relaxing experience! William had a lot of fun hanging out with his grandpa and exploring the interesting beaches of Santa Monica, Venice and Long Beach.  We also had the oppertunityt to take William to "Hollywood". William was a little dissapointed that Hollywood was not filled with celebrities walking around everywhere but, he had a great time exploring all the stars, visiting the chinese theater, and taking photos with some of his favorite characters, Spongebob, Shrek,Elvis and Elmo.

William and I returned to Sacramento yesterday afternoon. Unfortunately our day yesterday started at
4:30 am yesterday as Grandpa had a 6am flight out of LAX; Fortunately, the drive was back was filled with little traffic, a lot of eye-spy games, and countless jokes courtesey of William's imagination.

Upon our arrival in Sacramento, William had a clinic visit to check his blood counts and ANC levels.  During the appointment I asked the Dr. if he had spoken to either of the doctors in LA? Long story short, the conversation between us ended up in the parent conference room (nothing good ever comes from that room) where I had an emotional melt down. .........................Before I get too side tracked with my emotional jibber jabber, let's review some facts from the consults we had this week.

Consult number 1

Dr. Clarke Anderson at City of Hope.  

The meeting was extremely positive and discussion included stem cell rescue, whole liver radiation, and high dose chemo.
Consult number 2
Dr. Marcio Malagolowkin at Childrens Hospital of LA.

This consult was not as positive but, treatment options included debulking surgery, Chemobilization, and possibly doing a stem cell rescue.  O' and I need to mention that due to some confusion at the hospital, Dr. Marcio did not have the opportunity to view William's scans prior to the meeting; therefore, everything discussed during our consult was based on assumptions and estimations

The meeting yesterday was a detailed and honnest review of the following: 

William's disease is in the following areas

*Lungs -microscopic

*Mediastina

*Liver-Bulk of the disease
*Spleen

*Retroperitoneal Lymph node

*Left Testes
*Multiple bone masses including spinal cord

Yes, this is a lot but keep in mind that this is a drastic positive improvement from the initial diagnoses 10 months ago.

We have two treatment options:
*Balance and maximize quality and quantity of live, knowing the inevitable outcome.
*Pursue cure at all costs knowing that historical statistics on this disease are not good.

If you know me, then you know that I am not going with option 1. We are fighting this!! William is an amazingly strong little boy and he deserves the chance to grow old! I am not naive, I understand the odds, but 1% is still more than 0.

Now, let's go over how the above mentioned facts correlate with the treatment options discussed with both doctors in LA.

*Whole liver radiation

Not an option. Radiation would mean a delay in chemo and a delay would allow the cancer in all the other areas of the body to grow and spread.

*Chemobilizatin

Not an option. Due to the fact that the cancer is in both lobes, 80% in right and 20% in left lobe
*Debulking surgery

Not an option. There are too many disease sites and recovery would delay chemo.
*Stem Cell Resue
Not an option. Progressive disease in bones

The current and realistic treatment plan:

For the next 3 months, William will do a combination of the following:
Temador and Irotecan for 10 days in an outpatient setting.
VP16 and Carboplatin for 5 days inpatient at Sutter

Temador and Irotecan prevent the cancer cells from growing and spreading.
VP 16 and Carboplatin kill the cancer cells.

Our goals with the new plan is to accomplish the following:
*Shrink all disease to microscopic levels
=Stem Cell Rescue
*Kill the 20% cancer in left liver lobe
=Right liver lobe can be removed and Chemobilization would be done in left (remaining) lobe to kill any microscopic disease
*Stablize disease in all organs
=Remove spleen, testes and retroperitoneal mass
*Completely kill disease in lungs
=No further treatment needed for lungs or mediastina
*Radiate bone disease
=Bone marrow transplant

Once all the removal, radiation, chemo and bone marrow transplant has gone as planned, William will need to receive a liver transplant. Because of the strict FDA regulations regarding transplants, William will not be allowed to receive a transplant in the US. Basically, our best chance for liver transplant is for us to find a reputable doctor, surgeon and hospital outside of the US that would take 1/3 of my liver and transplant it into William.

As you can imagine, there is a lot to think about and a lot of information to process...

Keep on Keepin' on. Live Strong in God's promise of healing.

















Theraputic break from reality...

William and I have been in southern California with Grandpa for 48 hours and already we feel like different people. It is amazing how some sleep, a relaxed schedule and a lot of sunshine can change your entire outlook on life. 

Yesterday we spent the morning hours on the beach where William was fascinated by seagulls, seashells, and sea enenemies. William's laughter and bright smile made me realize that he needed this break from reality as much as we did.  Yesterday afternoon Granpa, William and I spent several hours at City of Hope Hospital where we met with Dr. Clarke Anderson. The meeting with Dr. Anderson was very encouraging and  extremely informative. The following are some of the main items that we discussed:

-1. City of Hope is willing to do whole liver radiation;Whole liver radiation is extremely rare and practically unheard off, but due to the miracle of some new technology that happens to be at City of Hope, Helical Tomotherapy is a valid option for destroying all the cancer is William's liver.

-2. City of Hope believes that a stem cell rescue and bone marrow transplant is William's best resource in beating this monster. Due to the reality that William has undergone 11 rounds of chemo, there is no guarantee that we would be successfull in getting enough stem cells BUT, at least they are willing to try YIPEE!!!!

-3. Ph. Balance diet has done a lot for William's body. Dr. Anderson mentioned that William's bladder recovered as well as it did because of the specialized diet.

-4. Natural supplements that we are using are probably doing more harm than good. The natural remedies that William is taking works by placing the cancerous cells in a "sleeping" or "hibernation" state. Chemotherapy is only effective against active cells and won't do anything to destroy the cells are not.

-5. The current chemo that William is on should be changed immediately. Dr. Anderson recommends VP16 and Ifosphomide as both of these drugs are aggressive in killing cancer cells and the combination is a good recipe for preparing his kidneys and bladder for stem cell harvest.

-6. City of Hope has extensive experience with DSRCT
-7.  I like Dr. Anderson and William seems comfortable with him.
-8. Patients have private rooms with beds for parents and a refrigerator.
-9. Monthly housing is available on campus at a low rate.
-10. City of Hope will be willing to transfer us in as soon as mid February.

 ------Most importantly, Dr. Anderson reminded us how amazing William's progress has been. William's tumor cell death and shrinkage is amazing and I believe that it is due to William having such good response that Dr. Anderson is so eager to help us-------You go William, I am so incredibly proud of you!!!

Tomorrow the tree of us will travel to downtown LA where we will be meeting with Dr. Marcio Malogolowkin, an internationally known oncologist that specialized in rare pediatric liver tumors. We were told by Dr. Anderson that Dr. Malogolowin provided him with 1/2 of this knowledge on Sarcoma cancers and that he is one of the best he has ever met....  I am eager to hear what Dr. Malogolowkin would suggest and recommend...

Today was our only day that was free of appointments. We spent the wonderfully warm and sunny exploring the Santa Monica pier, chasing seagulls on the beach and people watching at Venice Beach (YIKES). Venice Beach is an interesting location, that's all I am going to say about that....

Anyway, thank you for checking in on us!

Keep on keeping on. Live Strong in God's promise of healing!